The story so far: this open letter on a friend’s blog calmly and rationally asked a number of the chefs from TV’s Iron Chef and Chopped to consider alternatives to Autism Speaks (AS) when supporting autism charities and autistic people. It sets out the well-publicized issues with AS’s repeated negative portrayals of autism and autistic people as tragic, broken and a burden on the rest of society. Portrayals that strongly suggest the lives of autistic children are defined by suffering; that carry the unspoken presumption that it would have been better if autistic people like me and many of my friends had never been born.
Please take the time to read Cristiana’s letter. It was written in response to her autistic son’s reaction to discovering that chef Michael Symon was to donate $50,000 to AS. She pleads from the heart as well as the head for autism organizations such as ASAN and AWN to receive the recognition they deserve. Let me be clear: she is not demanding that anybody cease their support for AS just on her say-so. Rather, she sets out the evidence to support her case, and asks that the reader makes an informed decision based on that.I’m posting this to signal boost because she could use all the support she can get in this. If you agree, please add your voice to hers and show that we are not just a few isolated individuals but an active community.
Today is World Autism Awareness Day, twenty five years on from when it was first set up by the UN. Twenty five years of little voices being lost in our noisy world. There are days for this, weeks for that, months for the other; it’s impossible to keep up with them all. And the majority of people aren’t even aware.
Many Autism advocates and allies are campaigning for much more than awareness. We’re not content with awareness: we want nothing short of acceptance as our right. That is a worthy goal, but for me it still falls short. I have been inspired by tweets from my friend @SoniaBoue calling for Autistic Pride.
I am proud to be Autistic. It is an inseparable part of who I am. I want to celebrate my Autism, dance in the street and party, hang banners from the buildings and lamp posts. I want to happy flap amidst rainbows and shiny things.
For many people outside the Autism community we are objects of pity, defined by our differences and limitations. Autism Speaks (and others) have been very effective at portraying us as tragically broken. But the real tragedy is the ignorance and fear they have created.
We are people. We have the right to be treated with respect and compassion. We have the right to equal treatment, the right to a presumption of competence, the right to make independent choices about our lives. We have the right to be proud of who we are.
I’m not going to plaster my profile with various symbols purporting to symbolize Autism. Instead I am just going to say this,
I am Autistic and I am Proud!
This is a post for the Love Not Fear flashblog in support of Boycott Autism Speaks.
Once-perfect child, my greatest hope,
Now tainted by a doctor’s word.
My happy dream gone up in smoke,
Autistic ashes, fear conferred.
My knowledge of my daughter’s plight,
My fear, uncertainty and doubts,
Were nourished by a Googled site:
Autism Speaks — or is it Shouts?
Each day I counted up the cost
And watched as cracks spread through our lives.
The daily stress now she was lost:
Our family fighting to survive.
Until the day I heard a voice
That sang me such a diff’rent song.
It taught me that I had a choice,
And what I thought I knew was wrong.
With positive examples found
Of how my child could think and feel,
I knew a moment so profound,
I knew our fear-born wounds would heal.
With hope rekindled in my heart,
The daughter that I hold so dear
Turned out to be both brave and smart.
Our bond is built on love, not fear.
Autism Speaks is a high profile US charity. Their website describes their mission as “funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families”. So why do I have a problem with them? Allow me to explain…